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Monday, March 26, 2012

HAPPY WORLD EPILEPSY DAY!!!! We are wearing Purple today for Epilepsy!

What are YOU wearing?!?!?

If you are wearing Purple for Epilepsy, please send us a picture to include in an album for our family, showing the many faces of support this Purple Day! Even if you don't have any purple clothes, find a hat, a ribbon or even make a sign to hold up ;-) we want your picture. Please, if you are so inspired - include a message, poem or prayer for Destiny, our family, or about your experience with epilepsy!

I have shed many tears since last May, when my Love received the definitive Dravet Syndrome diagnosis. We had experienced seizures for years prior. It was actually my son, Benny, who had the first febrile seizure. I remember that night like it was 2 minutes ago.

Destiny's first seizure was different...singing and dancing around, preparing to bathe one moment, and on the ground convulsing the next...My baby...This was my baby...no fever or sickness detected but the ER was certain the fever had to be somewhere...And again....And again...Word had it that Destiny had febrile seizures and also that she was having problems staring, chewing, walking straight, and waking in unconsolable and unresponsive 30–40minute screams because she had a "flakey" personality.

It was the picture-perfect evening in late June/early July of 2010 that led us on the path of no return. A fever was obviously not a trigger. Excitement was!! And temparure!We were eating dinner at a kids play water fountain...Destiny was running in and out of the shooting water laughing, thrilled, with one to two dozen other kids...and suddenly, our world stopped..."Save my baby!" I screamed at the cops and EMT's repeatedly as they gave her oxygen and tried to get history. Close friends met us at the ER for support and to care for my frightened boy, almost weekly after that, for awhile.

I remember her first Anti-Epileptic med, and the neurologist's words, "I strongly recommend you put her on this. It's not going to go away for now.". That was the beginning. Destiny was diagnosed with refractory epilepsy months before last World Epilepsy Day 2011, her genetic test for Dravet Syndrome was being processed, but still, in general, every professional gave me the impression she could still "grow out of it" or get it under controlled.

By April, the thought was she had another devastating epilepsy disorder called LGS - the severity and regression were alarming. In May, genetics confirmed Dravet Spectrum Syndrome (since then, 'Spectrum' has been dropped...)
The same neurologist who saw her for the very first time way back, happens to be the 'Dravet doc" and, well, here we are...no longer do we go to the ER until breathing is compromised...I am the 'expert' and make judgement calls all the time about when and how many times to 'rescue' per bad night, when sleep is sleep or non-convulsive status, who to entrust with her care, what risks are worth taking, when to wear the helmet, all the way down to what treatments to try next and how much of the truth my son needs to know when. I no longer scream "CALL 9-1-1 NOW" or even think doctors can help...I'm much more interested in their machines when we do go in ;-) This is Life as a parent of a child with a rare, unknown by most, life-threatening conditions.

I will be affected by epilepsy for the rest of my life, Benny and Destiny, too, as well as our loved ones, in one brutal way or another, for the rest of our lives. This Epilepsy Day, I celebrate my daughter, her resilience, her strength, her innate beauty inside and out: My heart goes out to our friends with uncontrollable seizures, and I weep for the families whose Angels have grown wings way too soon. I ask for compassion as I beg for a cure!!

Saturday, March 10, 2012

I first met Destiny back in September through a friend of my mom. Since then I have had the pleasure of consistently interacting with her, and what a wonderful experience it is! Being with Destiny is like escaping to a utopian island of bliss... a place where there are no worries, only laughter and joy. A place full of flying colors and magical creatures, a land of opportunity and possibilities with no end. A place where imagination becomes reality, and you become delirious on joy and contentment.

On a play-date with me at my house one day Destiny transformed into a beautiful girl named Crush. She had discovered the makeup supply in my room. After applying about five coats of blush and eye shadow she jumped up and exclaimed, “I’m Crush! Because I’m different with makeup on. And you’ll be Flush!” (hand held high in the air like Superman). Another day when I picked her up from her house she was wearing a very lengthy wig and announced, “I’m not Destiny, I’m Rapunzel!” In the car later Benny made an embarrassing error; he called her Destiny. She adamantly corrected him. Another time she spent hours with a friend cleaning my yard, every bit of it! The rag turned rather black, but wow did they work hard! She is a powerfully determined little girl. And we want to keep it that way.

Wedged under all this amazingness of Desty’s little brain there are some misbehaving neurons that sputter around crashing into each other and giving Destiny seizures. In order to try to stop this Destiny needs medicine. But unfortunately this medicine, while utterly essential to Destiny’s development, is extremely expensive, and it is ridiculous to assume that any somewhat normal family can afford it on their own. One way we have been raising money is through the wonderful craft of beading. My sister, who has disabilities and who is also another incredible young being, has developed a beading business; a result of her LOVE (or, obsession, you might say :p) of jewelry. Members of our community have been gathering on Sundays to create beautiful bracelets which we then sell to raise funds for Destiny’s medicine.

Please support Destiny, her family, her community, and all the dreams, beauty, and joy that comes with her, by buying one of these bracelets! With each bracelet you will be helping Destiny in her battle against the seizures and you will be a part of this incredible community that is supporting, fulfilling, and realizing Destiny’s magical world.